Sunday, September 09, 2012

3 Coins in a Fountain

The, sometimes quite loud, opposition to anything I write about being a contented wheelchair user, or my pride in being a member of the disability community, has had me thinking a bit about how I came to this world view. I think three things are at play here.

1) I have spent a lifetime being different, one way or another. I've always been fat. From the moment I became aware of gender/sexuality/love I knew that I was different from the norm. The journeys I've had on either of those roads led me to a point where I believe a happy life is a life of self acceptance, even in the face of opposition. I spent time, a lot of time, in self loathing. I spent a lot of time considering suicide. I spent a lot of time praying. But during those dark times, life and purpose and love kept shining through the cracks. Finally I realised that it was I who drew the curtains and therefore it was me who could throw them back. And I did. By the time disability came along, it didn't seem to me to be such a big deal. Another difference. I wrote about someone once THERE CAN BE TOO MUCH DIVERSITY IN JUST ONE PERSON, and I suppose that can now be said of me. I'm cool with what comes. I'm cool with who I'm becoming.

2) I worked in a school, decades ago, as a classroom assistant, supporting teens with physical disabilities. They had a segregated home room and went to regular classes with regular students. The irregularity of regular students is never much mentioned but, one day, should be. Anyways, these were all kids who were borne with their various disabilities. They were amazing and very cool kids - I don't mean in the yucky kind of inspirational way - I mean in the incredible way that they handled difference and disability and the discrimination that comes with it all. One student in particular who fumed at having to enter a building by going on the ramp used for the garbage trolleys ... fuming at fumes, she called it, taught me so much about blatant discrimination that was completely invisible to others. I had thought that we were lucky that they had a ramp, she railed against entering the back door while all others went in the front. That year I spent doing that job, now that I look back on it, seemed to be prep school for the life I live now. Their wheelchair may have defined, to an extent, their identities but it didn't confine their aspirations. Later I would learn that the world view of those born with disabilities and those who acquire them later in life can be wildly at conflict - but that's a subject for others with a deeper human vocabulary than I have to write about.

3) I've never written about the day I lost the ability to walk (in front of three hundred people attending the lecture that day) and the surgery that cemented my status as a disabled person. I'm not ready to do that now. It's a story that only a few know. Maybe one day I will be moved to write it all down. But the moment that is pertinent here happened just before surgery. I was asked to sign a paper acknowledging the fact that I was told that the likelihood of success was low and that I may well die during the operation. I had a choice, surgery and chance of living, certainty of dieing in a day or two. I choose to take the chance. I woke up in recovery. Got some pretty spectacularly bad news. Got some even more spectacularly good news. I was going to live. They had a pretty good idea of why this happened to me and figured that they could prevent it from happening again. The ability to walk, which I'd lost just days before the surgery, wouldn't come back. But, life would. I don't know but it seemed a step up. Those who say 'I'd rather be dead than disabled.' Well, I had that choice and, personally, I think rolling around in a wheelchair is better than spinning in a grave screaming 'WHAT WAS I THINKING!!!!'

So, at the intersection of those three events/things I found a peace with who I am, where I am and how I move. I don't wish to spend time in wishing for something else, when this is the something I wished for waiting for surgery, another day, another breath, another opportunity to get it right. I am living the wish. And, I have no desire to waste time on wishing for what won't come instead of enjoying what does come. Further, I believe that using my energy towards making social change is kind of the responsibility that comes with a second chance.

9 comments:

Purpletta
said...

Dave, Thank you for being who you are & for sharing who you are with all of us, through your many works of heart... You are incredible - not in a yucky inspirational way :) in a true to life, true to yourself, true to a broader sense of good way... I could go on in my generally wordy way, but I will leave it as Thank you for being you...Purpletta

"Those who say 'I'd rather be dead than disabled.' Well, I had that choice and, personally, I think rolling around in a wheelchair is better than spinning in a grave screaming 'WHAT WAS I THINKING!!!!'"

That reminds me of a difference I've noticed among parents of developmentally disabled kids. It seems like often those whose kids have additional medical issues are more accepting of the child's developmental issues than those whose children have only developmental issues.

In particular, it seems parents of long-term survivors with Trisomy 13 or 18 seem to get a great deal more joy out of their children than many parents of autistic kids, even though their children are a lot more severely disabled. I think the reason is, if you have a newborn with Trisomy 13 or 18, you're told they're going to die. Very high chance that they will die within a few days of birth, 90-95% chance that they won't live to their first birthday. So, when a child with one of these trisomies does live to their first birthday (at which point their expected lifespan becomes decades rather than days or months) the child feels like a miracle to the parents.

I actually heard of one woman, whose child has regressive autism, but where one of the doctors early on got the notion that the kid probably had a fatal degenerative disorder. When they ruled that out and concluded that he was just autistic, she celebrated. Her view of autism reminded me a lot more of most parents of kids with rare chromosome disorders than of the more standard view of autism.

I think there is something to be said for the value of being reminded that life itself is precious. It makes things like disability seem much less significant.

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Disability Pride

Dedication

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.